The excerpts below all come from Polios Legacy: An Oral History
(Sass, 1996). The dates in parentheses indicate the year in which
each individual contracted polio. Page numbers follow each excerpt for referencing
purposes.

Richard O. (1940)I had polio in 1940. Since I was twelve years old then, I can remember
many of the details about it. Polio is an unusual disease in that there
are two periods of illness as the virus enters the system. The first is
associated with an infection of the nose and throat and sometimes the stomach.
I had an illness that lasted for a few days, and I was even ill enough to
stay home from school. I felt well the next day though, so I went back to
school and carried my newspaper route. The following day, however, I was feeling
ill again. I got up for breakfast and then went right back to bed. After
an hour or so, I woke up and tried to get out of bed but fell to the floor
because my legs would no longer move me, and I was rather limp. I was then
taken to the University Hospital in Indianapolis where I was diagnosed with
polio (p. 30).

David K. (1952)I remember the day that I was diagnosed with polio very well. That
morning, I was in physical education class at school, and we were out on
the football field playing touch football. I noticed that as I was running,
my leg would be weak, or sort of collapse under me. I didn't really think
too much of it, but then later that day I was playing with the high school
marching band at a polio benefit parade in Hibbing, which is about 30 miles
from Coleraine where I grew up. During the march in that parade,
my legs again became weak. In fact, they were so weak that I had to drop
out of the line of march, and I went back to the school bus to lie down.

As part of the polio benefit that evening, there were stock car races.
They were sending the proceeds from the races to the Polio Foundation.
I was feeling pretty sick at that time, so I stayed in the school bus during
the races where as the other band members were out watching them. The
band director came back to the bus, and after taking a look at me, he
decided that he should find a car and drive me home. When I got home and
my parents saw what condition I was in, they became very concerned. They
called a doctor right away that evening. He came out to the house and made
the diagnosis of polio and sent me to the Hibbing Hospital. I remember
that I walked into the hospital, and that was the last time I was able
to ambulate on my own (pp. 61 and 62).

Sharon K. (1953)About the first week of August, 1953, I spent a week at church camp.
I had a complete physical before going to camp, and I was perfectly healthy,
at least as far as we knew. I left for camp on a Monday morning and spent
the week swimming, going on nature walks, and doing all the other things
kids do at a summer camp. There was a lot to do, and I probably didn't
get as much sleep as usual.

I got back to St. Cloud on Saturday, and that's when I began having symptoms.
I remember feeling this strange sensation. It's hard to describe, but it
was as though my head was under water. There was a ringing in my ears. I
had a severe headache, and my vision was blurred. On Sunday, I felt very
fatigued. I always sat with my mother in church, but that day, I was so tired
that I had to lie down and put my head on her lap. My mom probably thought
I was pouting or didn't want to be in church, but that wasn't the case. I
just was feeling very ill (p. 112). On Sister Elizabeth Kenny:Both of the individuals quoted below met and were directly treated by
Elizabeth Kenny. Robert claims to be the first acute polio patient with
whom she worked in the United States.

Robert G. (1940)I don't remember the exact date, but I was laying there, and my mom
walked in and said, "I've got somebody here that may be able to help you.
This is Sister Elizabeth Kenny." Of course, when she said sister, I was
thinking, "What's going on here." But she was standing on the left side
of the bed, and she looked down at me and said, "No Bobby, my name is Elizabeth
Kenny. The 'sister' means that I am a registered nurse from the Australian
Army. That's our title." I looked up at her, and I remember thinking,
"Wow, what a big woman." She must have been about six foot one and weighed
close to 200, 205, maybe 210 pounds. So she was one big woman, and oh man!
She carried herself like a queen. Her size sure didn't bother her at all.

She looked me right in the eye and said, "I'm here to try to help you.
But, before I can help you, I've got to hurt you." Well, what could say?
So, she reached across the bed, grabbed my hand, and started shaking it.
Then she said, "Now, we'll get started." So she lifted up my left leg and
started trying to find out how good or bad it was, and I was damned if
I was going to let anybody know how bad it hurt. I mean, I wasn't going
to yell, but the next thing I knew, I was crying from the pain. She noticed
that, so she put down my left leg, but then she started on my right leg,
and a few more tears came. Finally, she let go of my right leg and said,
"We won't do anything with your arms right now; I'll come back later this
afternoon."

She came back that afternoon and was fooling around with my fingers and
hands and arms. Then she said to the nurses, "Do you have any old blankets,
completely wool blankets?" The nurses told her that they had plenty of
them, and so Sister Kenny said, "all right, get me one, and bring me a
pair of scissors." So she showed the nurses how to cut strips out of the
blankets to fit the arms and legs, and then she said, "We'll need some
hot water; we're going to put the blanket in it, and then we have to wring
it dry." Well, they've got plenty of hot water at a hospital, but they didn't
have any way to get the blankets dry enough. So, my mother brought in this
little hand ringer, and they put it on the side of the tub that they put
the hot water in. They put the pieces of blanket in the hot water, then they
rung them out, and wrapped me up in them. But they didn't have any pieces
of plastic to put over the blankets like they should have, so they took
out that good old rubber sheet again and covered me up all the way from
my toes to under my chin (pp. 23 and 24).

Ray G. (1946)She was a very tall and elegant woman, and she inspired confidence
just by her manner and the way she carried herself. She had a delightful
accent which made her an interesting person to listen to. If I close my
eyes, I can still visualize her standing next to my bed wearing a long, black
dress and a big hat with a beautiful ostrich feather...She didn't wear jewelry,
and she didn't wear any makeup. I remember her face as being strong and
angular, and her eyes were very intense. When she looked you in the eye,
that intensity demanded all of your attention, and when she spoke, people
listened to her... Everyone knew who was in charge, and we received whatever
treatment she recommended. I've never known anyone as assertive as she was
(pp. 43 and 44). On hospitalization and treatment:Arvid's and Sharon's recollections tell the familiar story of isolation
and the "Sister Kenny treatment" of hot packs and stretching. Richard's
memories describe the "convalescent serum" and immobilization used before
Sister Kenny's arrival in the U. S. Neither of these treatments was helpful,
and immobilization was probably harmful.

Richard O. (1940)At that time they had some idea that it was an infectious disease,
so I was given what was called "convalescent serum" which was made from
the blood of people who had recovered from polio. That form of treatment
was in vogue back then. It seems unlikely that it had any effect since the
disease progressed to rather pronounced paralysis with no movement in either
leg and no movement in my abdominal muscles. I was put in isolation, and
I think I might've been told that I had poliomyelitis. However, I didn't
know what poliomyelitis was. Nobody told me that I had infantile paralysis,
which I would have recognized because Roosevelt was president at that
time, and I knew he had suffered significant paralysis from the disease.

As part of my treatment, I was kept on a frame made of canvas strapped
across a metal bar. I was then put in Toronto splints, which were leather-covered
splints that kept the knees bent, the feet pulled out a little bit, and
the legs spread apart. It was really creative and in some ways like a bad,
normal posture. It was almost like the people in health care thought that
normal posture should be like Leonardo da Vinci's picture of a man spread
out rather than with his legs held underneath. I spent a total of nine
months in that situation with very little therapy. The next year, they
did start doing therapy with me using braces and having me stand as the
main form of treatment (p. 32).

Arvid S. (1952)(My early treatment) consisted basically of hot packs and then more
hot packs. I dreaded them. They were hotter than hot, and before they
cooled off, they'd come by and put on fresh ones. We had to lie on our
backs with our feet up against a footboard. We weren't allowed to sit up
or even lie on our stomachs, and we couldn't have a pillow...There were
two sessions of hot packs in the morning and one in the afternoon...(and)
there was a great big guy who would come and do the stretching. It was quite
painful, especially when he would come and stretch my leg muscles (p. 145).

Sharon K. (1953)After the spinal tap was done and the diagnosis of polio was made,
I was immediately placed in isolation and told that I shouldn't raise my
head. I remember that they put me in a crib! I was nine years old, and I
couldn't understand why I had been placed in a crib. It was very degrading.
I certainly wasn't going to climb out of bed, nor was I likely to roll over
and fall out. In fact, I could hardly move. As I lay there in that crib, I could feel
the virus really setting in. It was like a door slamming shut. I felt like
my world had totally changed. To make things worse, it was terribly hot
and humid, and of course, that was before air conditioning; I remember feeling
very uncomfortable . . .

After a few days, they began whatever form of treatment was in vogue back
then. I remember that we had to take some vile kinds of red and green liquids.
I'm not sure if I had to take one or both, but I know that when the tray
came around, I didn't want to drink either of them. My most vivid memory,
however, is hearing the large, wringer washers being rolled down the hall.
They used those washing machines to heat up the water in which they would
dip green army blankets. Then they'd put them through the wringers and
wrap our bodies in them. I believe they did that twice a day, maybe at
ten or eleven in the morning and then at about four or five in the afternoon.
I was never one to be bothered by the heat, but the combination of the sultry
August weather and those hot, moist blankets was very uncomfortable (p. 113).
On the iron lung:Marilynne R. (1949)The morning of the third day I was hospitalized, which was the first
or second of September, I had cereal, juice, and chocolate milk for breakfast.
I remember trying to pick up the chocolate milk, and it fell right through
my hand. I felt so bad because I couldn't move anymore. The nurses all
rushed in and cleaned up the mess. I remember I wanted the chocolate milk,
but I didn't get it. Instead, they brought me a straw, and I drank some
juice. After that, some doctors came into my room and had me count backwards,
10-9-8-7-6 for as long as I remember. I was laying down at that time because
I was having trouble sitting up.

After a while, they came in and told me they were going to put me in a
machine that would make me feel better. I would be more comfortable. I
don't think they called it an iron lung or even a respirator when they were
telling me about it. But, I remember they wheeled me into this small room,
and there was this big machine. I think because my cousin was a nurse and
had been trained at the University, I wasn't really afraid of medical personnel.
I rather trusted them when they told me I would feel better. I remember
they opened the respirator; it seemed really huge, and they laid me on the
tray with a mattress on it, and then they slid me through the hole at the
front of the big roller part. Then they closed up the collar and told me
to really relax. They told me I'd feel much better, and I did. I could
breathe more easily.

After that, I think I pretty much lost everything. I don't really remember
the sequence of events for the period that followed, so I probably was
not too coherent for a while. I do remember being left on the respirator,
but I have no idea for how long. According to my hospital chart,
I was in and out of the respirator after the first few weeks. I know I was
out of the respirator for several periods of up to five weeks. I assumed
that I wouldn't need it anymore, but it didn't turn out that way. I've needed
it all my life. I still sleep in it. To me, the time in the respirator is
the time to sleep (pp. 55 and 56). On learning to walk again:Many, perhaps most, children who contracted polio were told they would
never walk again. Like most of us, Robert (Bobby) did walk again. His
recollections of this event, however, are more colorful than those of
most others!

Robert G (1940)Getting back to my exercises, one day toward the end of my stay in
the hospital, Bill Bell, my physical therapist, said to me, "When we're
done with your exercises today, you're going to walk around this table."
I told him that I couldn't do it, and he said, "Don't think about it; just
do it." Now he wasn't rough or tough or anything, but when he told you to
do something, you did it. That was his job. So, when my exercises were over,
I walked around the table a couple of times. Bill said, "See, you
can do it." I said, "Yeah, but I was holding onto the table." Well, his
response was, "I don't care if you were holding on or not. I told you to
walk around the table, and you did it. You're not going back to your room
in a wheelchair, your gonna' walk back. I'm gonna' help you, but you're gonna'
walk back." He put his arm on top of my shoulder, and I was walking down
the hall. I got to this guy named Henry's room (he's the one who gets all
the credit for being Sister Kenny's first patient in the U.S.), and Henry
said, "Hey Bobby, you're walking." I said, "Yeah, ain't it nice. Bell's helping
me." Henry looked at me and said, "Bell who?" I said, "You know, Bill Bell,
my therapist." Well, Henry kept looking at me, and finally he said, "Where
is he?" And I looked around, and there was Bill, down the hall, talking to
a couple of pretty, young nurses. I was walking by myself, and I didn't even
know it! Well, I took three steps forward, then two steps back, and
I fell flat on my butt! Henry and I were laughing so damned hard that everybody
came running over, because nobody ever laughed on that ward. They all wanted
to see what happened, and they were shouting, "Anybody hurt; anybody hurt?"
Henry was laughing so hard he was crying, and I was just sitting on the floor
laughing. But from then on, I walked. (pp. 26 and 27). On using a wheelchair:Getting where one needs to go in a wheelchair has never been easy, but
before the disabilities rights movement and the Americans with Disabilities
Act, it was often nearly impossible. These two excerpts illustrate this
point all too well.

Marilynne R. (1949)Discrimination against those of us who use wheelchairs lasted a long
time. I had a lot of problems with discrimination in the 1960s and 70s.
I was asked to leave a restaurant because it bothered the other customers,
and I was asked to leave a concert at Northrup Auditorium. A friend and I
went to see this concert, and I was asked to leave because of an order by
the Fire Marshal. I was ready to and ask the Fire Marshall if he really
thought I shouldn't be there. I guess he thought I couldn't maneuver through
the aisles very well, but I didn't think I was obstructing anything. Maybe
he thought that in case of fire people couldn't get out. It seemed to me that
in case of fire I'd be the one to get trampled . . . I left highly insulted!
(p. 59)

David K. (1952)I was really quite naive about going to college and was surprised
to find that the university wasn't accessible for a person in a wheelchair.
But that was 1955, and that's the way it was then. There were steps all
over the place, and it wasn't like high school where I had a group of friends
to carry me around... Many times I had to get a bunch of volunteers or just
recruit people as they were rushing from class to class, and sometimes
they would say, `I just don't have time. I can't help you.' . . . I had to live in an apartment off campus because not one of the dorms
was accessible (pp. 66 and 67). On wearing a brace:Edmund Sass (1953)If you've never seen a Milwaukee brace, it's quite a contraption.
The bottom is made of leather which fits around your hips and pelvis and
buckles up in front. I wore that part under my pants. There is a long metal
bar that attaches to the leather and runs up the front. That goes outside
of your clothes. It extends up to your neck where it attaches to a padded
chin rest. The chin rest bolts to an additional padded piece that fits behind
your neck. And, of course, another bar attaches to that and extends down
your back where it connects to the bottom leather. Mine also had a leather
strap that fit around my side to hold in my scoliosis. I guess it was
the ultimate portable traction device. I wore that thing nearly twenty
four hours a day.

I vividly remember the first day that I wore the brace to school. It was
the middle of the school day. Apparently I had gone to the doctor that
morning to have the brace fitted. My mom dropped me off at the door, and
I remember she had tears in her eyes as I walked away. I was determined
to be brave, but as I approached the room, I heard somebody say, "Here he
comes," and I lost all of my courage. After I took my seat, the teacher asked
me if I wanted to say anything to the class. Everyone was staring at me
with great anticipation. I think I managed a feeble, "No." I just wanted
to hide under the desk or disappear..

For days, maybe weeks thereafter, that Milwaukee brace was the major topic
of conversation around the school. It was almost like the other children
were delighted to have this new curiosity in there midst. Eventually,
of course, the novelty wore off, and things basically returned to normal.

Outside of school, though, nobody knew what a Milwaukee brace was or why
I was wearing it. So, I used to get a lot of stares and questions. When
I'd tell other kids that I wore the brace because I had polio, they'd often
say something like, "Boy are you lucky." I could never really understand
that reaction. I guess they meant I was "lucky" that I wasn't dead or in
an iron lung. But, it always seemed to me that if I had really been lucky,
I never would have gotten the damned disease in the first place.

I got so tired of explaining why I wore the brace that when other kids
would ask me about it, I'd say, "Well, my dad's a carpenter, and one
day he got careless with the electric saw and cut my head off. The brace
holds it on." The looks I got were amazing. What's even more amazing is
how many kids believed that's really why I wore the brace!

Jim O. (1948). . . I was supposed to wear the brace on my arm all the time, and
my mother was very adamant about me wearing it. But when my brothers and
I would go off and play, I'd just take the damned thing off and throw it
on the ground. At school, I would normally leave it on in the classroom,
but as soon as we'd go outside for recess, I'd take the damned thing off again.
You know, I think taking it off to play was probably more beneficial in the
long run because it allowed me to exercise that arm and build up the muscles
that weren't paralyzed. But, I do remember that my mom used to get after
me regularly about doing that!

I guess I must have worn that stupid brace on my arm for two or maybe
three years. Then some time during the last year that I wore the arm brace,
the doctor diagnosed weakness or some other type of problem with my leg,
and so I ended up with a brace on my leg which extended from the hip all
the way down to my foot. There was a bolt that went through the heel of the
brace, and it held the foot and knee immobile so that it could only move
up and down but not sideways. So, just about the time I was getting the brace
off of my arm, I had to start wearing one on my leg, and I guess I wore that
one for another four, possibly five years.

So, I wore some sort of brace until I was thirteen or fourteen,
and I remember that they wanted to do surgery on me too, but my mom wouldn't
let them. I can vividly recall a visit to the doctor during which he proposed
doing an operation on my right arm that would have basically bolted the
arm to the shoulder bone. He wanted to just put a bolt through the bone
in the arm and screw it into the shoulder which would have really limited
my range of motion. It would have appeared like I had two usable arms when,
in fact, one of them wouldn't have been usable at all. Well, my mom listened
to what he wanted to do, and she just told him, "No way." Believe me, I've
been forever thankful that she refused to let him do it because that arm
is in relatively good shape now (pp. 216 and 216) On polio-related surgery:Many of those we interviewed underwent polio-related surgeries, most
often on their legs and feet. Gail had six such surgeries and as the following
excerpt shows, she remembers them quite vividly.

Gail B. (1951)I remember getting scrubbed with antiseptic the evening before my
surgery. Once you got back to bed, you weren't supposed to get up again
until your surgery. Then at midnight they'd come into your room and put
this red vest on you. That meant you were all prepared for your surgery.
They'd actually tie it on so you couldn't get it off. The next morning,
you'd hear the cart coming down the corridor. You'd hope the cart was coming
for someone else, and if it went past your door you'd breathe a little bit
easier. But then your door would fly open, and you knew the cart was there
for you... and then you just got on the cart. You didn't fuss... The operating
room was always cold, and you'd have to crawl off of that cart onto that
cold operating table. They'd put these big leather straps over your leg and
tighten them up... I remember lying there terrified and thinking that they
were going to cut my leg open, and I wasn't even asleep yet.

I remember that after your surgery they would write on your cast what
kind of procedure they had done. It was kind of their trademark . . . It
was rather impersonal, I always thought, to identify you by your surgery,
but that's the way they did it back then (p. 78). On going to school:Back in the 1950s and 60s, neither school buildings nor buses were accessible
to those with disabilities, and many polio survivors had to go to special
schools for "crippled children" or be carried up and down stairs. As illustrated
by the third and fourth excerpts below, even those who didn't require special
provisions were likely to experience difficulties with social acceptance.

David K. (1952)I went back to school that fall of 1953, and of course, back in those
days, schools were not handicapped accessible. There were no elevators,
so in order to get to the upper floors, a crew of several students would
have to grab my chair and lift me up the steps. They did make some accommodations
in the classroom itself, because they had to move desks around to fit my
wheelchair in. There were also some arrangements made where I could stay
for some classes on a lower floor, and the lessons would be brought down
to me. A student monitor was there to help me, but for the most part, I
was just carried up and down the steps.

I didn't like the idea of being dependent and having to rely on people
to do this for me. However, I just had to face up to the fact that
it was the only way I was going to get up to those other classes and continue
on with my schooling. For the most part, the guys who helped me
were quite willing to do it, but I sure didn't like it (p. 65).

Diane K (1949)We lived in Manitowoc, Wisconsin, and they didn't have any physical
therapy or orthopedic services for me there at that time, so I was sent
away to Sheboygan, Wisconsin. I lived in a foster home during the
week and attended the orthopedic school where they had a physical therapist.
I got physical therapy every day. They put me in a hot tub, and I had stretching
and exercises. The physical therapist basically taught me how to walk
again.

I was there for about nine months. It was a very sad period of my
life because I was a seventh-grader, and I was missing out on what normal
kids do during adolescence. I remember that they had a school bus that
would take me back to the foster home after school, and I would just sit
there alone all night and listen to the radio. There was no TV back
in those days, of course.

I did get to come home on weekends, but my friends were all busy already,
going here and going there. I couldn't keep up with them anyway.
I remember it as being a very, very painful year for me (p. 154).

Gail B. (1951)Going to high school was particularly difficult for me. It was such
an adjustment to go from a one room, country school where you knew everybody
to the high school in town. I had two strikes against me. First of all,
I was a country kid, and the kids from town used to tease me about that,
but I also wore a built-up shoe and walked with a limp, so I got made fun
of quite a bit.

Being different is really hard when you're in high school. I ended up
just not participating in a lot of things that I probably would have participated
in if it wasn't for my disability. I would have liked to try out for
cheerleading, but people made fun of me just for talking about it. So
I ended up keeping a lot of feelings inside. I didn't want to go to a
dance because I was self-conscious of my limp. I didn't want to have people
stare at me as I walked across the dance floor. I hated to have people
gawk and laugh at me. I think all teenagers are self-conscious, but when
you have some physical disability, it really magnifies that self-consciousness.
To this day, I hate it when people stare at my leg when I wear shorts (p
82).

Jennifer W. (1949)I remember the biggest challenge for me was getting on the school
bus. That first step up onto the bus seemed like a mile, and I just couldn't
do it. For a while my mother came out, and it was so embarrassing because
she would bring out this stool. But I couldn't stand the embarrassment,
so my dad and the bus driver (his name was Bill, and I remember him vividly)
got together and discussed how they could solve that problem. What my dad
did was go out to where the bus stopped, and he dug a trench in the dirt.
Bill would drive the front wheel of the bus down in that trench, and that
would lower the step down to where it was really close to the ground. Then
I could just get on the bus without a problem. And nobody really noticed
. . .

Even though my problems with the bus got solved, I think starting school
caused some other problems for me. The other kids in my neighborhood
had grown up with me, so they knew my limitations. . . But when I got
to school, I was with a lot of kids who didn't know about my handicap,
and they weren't as tolerant of me. They used to tease me and say things
like, "Hey gimpy, you walk like a duck." Even though it hurt my feelings,
I think I just used to smile and not say anything, and then they didn't
know what to do. I learned that if I didn't say anything back to them,
they'd stop. . . Also, I was lucky that I had a lot of kids who liked me,
and they would go over to the ones who'd taunt me and say, "Leave her alone.
She's nice." and that helped a lot (p. 242). On dealing with polio's late effects:Dealing with any disability is difficult, but as the following excerpts
illustrate, the development of a secondary disability such as post-polio
syndrome is a particularly bitter pill to swallow.

Janice G. (1956)When I was about 35 or 40 years old, I started having terrible pain
in my joints and muscles. I got tired very easily. I went to the doctor
and had x-rays and blood tests. I got some pills and had physical therapy.
Nothing helped. One doctor even suggested that my problems were all in
my head. He said, "Are you sure you don't just think you have all these problems?
You don't look sick, and the tests don't show any problems."

Then in 1988, my husband and I went to a football game in the Twin Cities
with my brother and sister-in-law. On the way home we drove by Sister
Kenny Institute. My sister-in-law suggested that I should call Sister
Kenny and ask them for my old records. She thought that maybe my doctors
could get some information from those records that would help them understand
my current problems better.

A few days later I called Sister Kenny Institute and asked them if they
could send my records from when I had polio in 1956. As I waited for
them to find the records, I explained to the person who was helping me
that I was experiencing all this new pain, and I was hoping that the records
could help explain why. Well, she asked if I had heard about post-polio
syndrome. I said, "No, what's that?" She explained that about 30 or 40 years
after you had polio, it's like you get it over again. She also helped me
get an appointment at the Sister Kenny Post-Polio Clinic.

Thinking about dealing with polio over again was more than I could handle.
I just fell apart. I called my sister-in-law and told her what I had
found out. I also told my family. I cried a lot. I showed my local doctors
my medical records and explained about my appointment at Sister Kenny Institute.
They again told me that polio was a thing of the past. I said, "Yes, but
I'm here now, and I'm living it again!"

I went to Sister Kenny Institute for my appointment and was diagnosed
as having post-polio syndrome. I needed to first accept that I had it and
then learn to deal with it. At times it is very difficult to think of the
future and what it will bring. I don't want to use braces and walkers and
wheelchairs again, but I think the hardest thing for me is to have hand weakness.
I didn't experience that the first time I had polio, and until your hands
start to become weak, you really don't realize how much you use them (pp.
261 and 262).

Sharon K. (1953)I believe that the hardest thing for me now is to realize that all
of the thought processes that helped me overcome my handicap, the attitudes
of, "If it's painful, I'll work through it; if it's hard, I'll work harder.
If there's a task to be done, I'll do it; I don't need any help" no longer
apply. That's the attitude that keeps you driving through your therapy
to overcome your handicap. And now, in this part of my life, I have
to find a way to accept that if I don't work from seven in the morning
to midnight, I'm still valuable. And that's the hardest lesson of
all, because so much of my life has been serving and living up to people's
expectations. And now I have to say, "How can I live within my limitations
and still be the same person I was?" And that's difficult for me.

I have clear memories of my first therapist in the hospital. She didn't
want a whimper or a tear from any of us. We were to be tough and gritty.
I did what was expected. I didn't question, and I got well!
These were my strongest memories of the lessons I had learned. I needed
to have a disciplined life with a no-quit attitude. That was what worked.
But it doesn't work for me any more. Now, I am learning that I must rest
when I'm tired. To work through the point of pain has caused muscle
damage. However, people's expectations of me, (morning meetings,
bus duty after a full teaching day, obligations such a concerts and weddings)
and my own desire to be part of life's mainstream, combined with my stubborn
"I can do it myself" attitude, tend to keep me from putting the limitations
on my schedule that I should (pp. 122 and 123).

Jennifer W. (1949)..our parents told us we were just like everyone else, and if we wanted
to do something, we could do it. It might be harder for us, but we could
do it. I think we just got that in our brains, and it's hard for us to
accept that we have limitations now, and there are things we can't do.
Our parents always told us, "You can do it; you can work around it; you're
going to get better." But what I have now is not going to get worked around;
it's not going to get better. In fact, it's probably going to get worse,
and that's scary. (p. 249).